My disability gives me different view on Terri Schindler-Schiavo case

November 11, 2003

As a disability-rights activist, I've been closely following the case of Terri Schindler-Schiavo, the Florida woman whose life has become a point of contention between her husband and her parents.

Terri Schindler-Schiavo's husband-guardian was initially granted permission to end Schindler-Schiavo's life by starvation and dehydration because of a widespread prejudice against people with disabilities. That prejudice poses a danger not only to Schindler-Schiavo but also to untold numbers of people, now and in the future -- especially people with impaired communication and people judged by others to have an inadequate quality of life.

Terri's husband, Michael Schiavo, based his decision on a shaky ground of vague recollections. After Terri's brain injury in 1990, Michael Schiavo won a malpractice suit against the doctor he accused of failing to properly diagnose his wife. A jury awarded $1.2 million, about $750,000 of which was earmarked for Terri's care.

After he collected the money, Michael Schiavo suddenly remember a conversation where Terri supposedly said that she would not want to live on artificial life support. At least one witness recalls a separate conversation in which Schindler-Schiavo questioned a decision to withhold life support from a patient in a coma. Nevertheless, a Florida court accepted Michael Schiavo's testimony as sufficient evidence to authorize her starvation.

Since then, the Florida state legislature and Gov. Jeb Bush have intervened, ordering the feeding tube reinserted. This touched off a firestorm of controversy surrounding the constitutionality of such intervention.

As I see it, the state should have gotten involved much earlier, to protect a vulnerable adult from abuse and neglect.

Schindler-Schiavo's condition has been inaccurately described as "comatose" and "vegetative." While she certainly has major limitations, Schindler-Schiavo can and does look around, respond to her environment and interact nonverbally with her mother and other loved ones.

Nor is Schindler-Schiavo being kept alive artificially, as some have said. She is receiving food and water -- a basic necessity -- through a feeding tube.

I use supplemental oxygen 24 hours a day and get around in a motorized wheelchair. Does that mean I'm being kept alive artificially? Does that mean I could be put to death?

For those of us who live with disability every day, the need for some technological aid does not evoke horror as it seems to for many nondisabled commentators. What does frighten us is the way that a life-and-death decision can be made -- even with questionable evidence and conflicting testimony -- based on a collective, deep-seated conviction that it's better to be dead than severely disabled.

I support the right to refuse treatment, but the Schindler-Schiavo case is not a simple matter of respecting a patient's wishes. It's about the nondisabled public's wish to affirm its bias against living with significant disability and Michael Schiavo's wish to marry his fiancee who is pregnant with his second child.

The Schiavo case has become a cause celebre, polarizing the "right-to-die" movement and the "right-to-life" movement. But Terri Schindler-Schiavo is first and foremost a disabled woman facing the worst kind of discrimination -- murder by starvation.

In any other conceivable scenario, a man who deprived his wife of food and water would be considered a criminal.

And a society that countenanced it would be barbaric.

Laura Hershey is a writer, speaker, trainer and activist, as well as a board member of Not Dead Yet (www.notdeadyet.org), a disability-rights group opposing medical discrimination and assisted suicide. Hershey's articles have appeared in The Progressive, Ms. magazine, Women's Studies Quarterly and many other publications. She can be reached at pmproj [at] progressive [dot] org.